A Conversation with Joan Engel, Former President of the National Neurofibromatosis Foundation

Jun 11, 2018

The Children’s Tumor Foundation began in 1978 as the National Neurofibromatosis Foundation (NNFF), established by NF patient Lynne Courtemanche, RN, her doctor Allan E. Rubenstein, MD, and the attorney, Joel S. Hirschtritt, Esq. A parent of a child with NF, Joan Engel was President of the Foundation from 1981 through 1984.

As we celebrate 40 years of driving research, expanding knowledge, and advancing care for the NF community, we asked Joan to reflect upon the origins of the Foundation, how the community has grown, and the progress made in research for treatments and a cure.

The Children’s Tumor Foundation (CTF): Joan, thank you for taking the time to speak with us about the history of the Foundation. Can you talk about the origin of the group, how it got started, and how you became involved?

Joan Engel: The Foundation was started in 1978. Lynne Courtemanche ran it until I met her in 1979. She was working full time as a nurse and running the Foundation from her apartment in the city.

I heard about the NNFF following an appointment consulting with Dr. Henry Mankin, who was Chief of Orthopedics at Massachusetts General Hospital at the time. His assistant told us about Lynne and the group she had started. It took me close to a year to decide to connect with Lynne. By then, she was so grateful to have someone in New York City, someone with a child with NF, but still willing and able to help. She had started building a community, but I guess she saw me as new and energized, with a higher potential to be of help.

At the suggestion of Ken’s father, I was voted in as president at an early planning meeting. Lynne was still on the Board, but she was relieved of the bigger responsibilities.

When you first became involved, what were you focused on? What were your goals in the beginning?

Well, just to try to get to know everyone, and to see what everyone was doing. At that time, we were focused on developing more chapters and doing what we could for fundraising. Plus, mail was coming in from everywhere, so there was a lot of correspondence to contend with. One of our first goals was to hire an Executive Director; remember, I was working nearly full-time then, as well.

And it was, at the beginning, mostly, with kind intention, an amateurish effort. I had not been trained in any sort of management. In January 1981, out of the first Board meeting came this summary, “The NNFF today is a poorly organized volunteer organization with tremendous potential. It could die, stay where it is, or go forward. Because NF is the most overlooked, common, and serious medical disorder in modern times. People with NF and their families call on us, in panic and crisis, with feelings of isolation, hopelessness, and despair.”

The report goes on to talk about the incredible growth we'd had, “Birth in March 1978, since then it has grossed $16,000 at the national level last fiscal year [meaning 1980]. And with funds from locals at Boston, Washington, Phoenix, Detroit, Albany, Buffalo, has $7,500 dollars available for research. It has nonaffiliated contacts in 40 plus states.”

That was released in January 1981. Lynne had only started the organization barely two years prior, so a lot had been accomplished. In part, the chapters formed because Lynne’s doctor (and the person who inspired her to start the organization), Allan Rubenstein, encouraged Joel Hirschtritt to be our pro bono attorney. He drafted the first chapter agreement, and then we went from there trying to get people to take on the responsibility of leading local groups.

Would you say the focus of the organization was more on this ground level community support and awareness? Or was funding research the goal and priority from day one?

It was definitely both. We were always very aware of the need to fund research, but, to further that goal, we also clearly needed to develop our community.

Chapters were seen as most important; in fact, the Massachusetts chapter was, from the beginning, the biggest source of income for the NF Foundation. It always had a wonderful group of very committed people.

How long were you president?

I was President until 1984, and then stayed on the Board of Directors for a number of years thereafter.

Was there ever a time, especially as a parent, where you felt like, "We're doing something really important?" Did you know at the time?

There was always a very powerful sense of doing something important, and that people really needed the group. Because almost everyone would say they had thought initially that they were alone in the world with this disorder. Nobody knew where it was going. Everybody was hearing, "You just have to wait and see."

And so, to begin to connect with a national organization that had the goal of trying, one day, to cure NF, and to create more successful clinical efforts and outreach for them, was wonderful. I mean, all of us had settled. I had heard the same thing when [my son] Ken was born, that you just had to wait and see. There was nothing one could do.

The growth of the NF Foundation really showed that one person can make a difference. If you ever felt alone, and there was nobody else, well step up to the plate, because look. Truly, when you think that if it hadn't been for Dr. Rubenstein saying to Lynne, "Okay, well if you're not finding anything, well then start something." And Lynne ran with it.

What was it like in the early 1990s when the NF1 gene was discovered?

I was still on the Board at that time and it was truly exciting. It was certainly one of the major goals, from a research point of view, to identify the gene. And even earlier than that, when the DNA project was underway, and the goals of mapping the human genome were known, it was an exciting scientific time.

Having been there at the very beginning, can you talk a little bit about where the Foundation is today?

It's an astonishing wonder where the Foundation is today, and it’s thanks to all those who began to participate as volunteers, our thoughtful medical directors and our special staffs! So grateful for the international growth that has evolved, and the projects that have been undertaken, and the goals that have been set - which are lofty - and which are being met. The extraordinary cooperation of scientists is beyond a wonder. It's what one would have always hoped for, but certainly, traditionally, there was such privacy around one's research, that it was not something that you would've taken for granted.

It's wonderful, too, that people around the world are being better served, not just in the United States.

Your son, Ken Rudd [a member of the CTF Board of Directors], was a child when you first became involved. Now an adult, he remains so supportive, active and involved. How does that make you feel?

I'm extraordinarily proud of Ken. From those earliest days when he was a child, we've always encouraged participation and never tried to impede him from doing anything. Our goal was to have him not become the NF that he had; we wanted him to experience a normal childhood, as a normal child. And so he did an awful lot over the years. He learned how to scuba dive. He learned how to sail. He learned how to swim and how to ski. And had from the get-go, an apparently wonderfully strong sense of self, and identity. And isn't that what we want for all our children?

So, seeing how he has elected to lead his adult life, and become more involved in the Foundation, to me completes a wonderful circle. He's such a bright person, and he's so talented, and I think most people forget within moments that he has any disfigurement at all. The person becomes visible, and not the NF. And that's what we want for our children. He is doing extraordinarily well. I know he's contributing a lot.

What you are hoping for in the next 40 years from NF research and awareness?

From my point of view I couldn't possibly, short of hoping for a cure, project what the Foundation might do. But I have terrific and full confidence that the existing nature of the organization will develop and evolve appropriately, and towards its best outcomes.

The Children’s Tumor Foundation continues a celebration of 40 years of fighting NF. Click here to read more about our anniversary. Click here to read our conversation with Joan's son, Ken, an adult living with NF and member of the Children's Tumor Foundation Board of Directors.Click here to read the latest issue of NF News, the official newsletter of the Children’s Tumor Foundation.